JDRF on Stem Cell Research Boost: An Interview with Larry Soler

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As you all know, President Obama lifted Bush's longstanding restrictions on federal funding of human embryonic stem cell research yesterday -- a huge breakthrough for all those who believe this avenue could produce unprecedented treatments for many incurable diseases. Like diabetes.

Among others, the Juvenile Diabetes Research Foundation (JDRF) has fought long and hard for this boost. Its staff and members are pretty much ecstatic. A small group including Larry Soler, the organization's EVP of Government Relations, was personally on hand in the White House for the signing ceremony Monday. Larry was kind enough to take a few moments that afternoon to share his insights with us here at DiabetesMine, with a focus of course on the implications of this decision on Type 1 diabetes research:

DBMine) First off, Larry, what's going through your mind today?

LS) It's a great moment. I've been working on this for over 10 years. I first came to JDRF in 1998, and stem cells were discovered that year. So I'm just ecstatic that it finally happened, but there's some sadness too that it's taken so long and so many people were lost along the way.

DBMine) This is pretty emotionally charged...

LS) It's too bad that it's been so partisan. But stem cell research clearly has strong public and bi-partisan support now. In terms of public opinion, when we first started working on it, lots of people didn't understand it. Now with a lot of information and education out there, public opinion is in around the 70% support range.

DBMine) What was it like actually being in the White House for this historic event?

LS) There were national TV crews lined up along the back, print reporters standing up all over, and cameras clicking everywhere.

To be there when the President says "politics will no longer play a role in science in my Administration"... It was a powerful moment for lot of people.

When the event ended, the President shook hands with everyone in the crowd. I was so excited, in particular because I was doing my first twitter...

DBMine) You must have been pretty nervous. I just have to tease about your tweet that you "shaked hands" with the president and "he said we would get diabetes solved." What was that all about?

LS) I made sure to thank him on behalf of all the families effected by Type 1 diabetes. The daughter of Senator (Jeanne) Shaheen (D-NH) was also there, whose little girl has Type 1. Obama said something to the effect of, "we're working on this so they won't have to take shots anymore." Something about "taking care of diabetes."

He seemed very determined, very serious. He seemed to recognize the importance of this for so many people with diabetes, Parkinson's, ALS, and other diseases.

Gosh, the last time there was an event addressing stem cell research in the White House it was the vetoing of it. This was just such a different atmosphere!

DBMine) What's the first thing JDRF is going to do now?

LS) Well, I'm going to go out and celebrate. The whole team is! (chuckles)

Then of course we're going to roll up our sleeves and get going. One of the first things we'll do is work closely with the NIH (National Institutes of Health) on developing new guidelines for how the research can be conducted. Obama's Executive Order sets a period of 120 days for the NIH to develop guidelines, which is just what we wanted: allowing science decisions to be made by the NIH, not the White House.

We'll work closely with them to make sure the guidelines are appropriate -- not too lenient and not too burdensome. They have to be updated from the previous guidelines set in 2000 to take into account the new types of technologies available now from the private sector. There's also an opportunity for public involvement in setting these guidelines. They'll make the draft available in the Federal Register and anyone can provide input within a certain timeframe, usually 30 to 60 days.

DBMine) Ethical guidelines...?

LS) In some part, yes. The ethical framework discussed revolves around patients providing embryos they are not planning to keep and that would otherwise be destroyed. We talk about "appropriate informed consent," but how do you define that?

We also want to make sure that people are not being compensated, so there's no financial inducement involved. The NIH will also set some parameters on what's appropriate for federal funding.

DBMine) Will there still be lobbying to do as well?

LS) Yes, another thing we'll be doing is quickly pushing for legislation on Capitol Hill to establish this executive order. That means making provisions that if Obama's no longer in office in four years, this cannot be easily reversed. We'll push for legislation in the House and Senate. We have a good chance to pass it; we clearly have the support to do it.

DBMine) Last year, JDRF funded some $2 million in human adult stem cell research, and $4.9 million in human embryonic stem cell research. How will those numbers be different this year?

LS) We don't really know what's going to happen with funding until the NIH begins to get applications to receive funding.

It's hard to know... but historically we were investing only single-digit percentages of our budget in this research (probably about 2.5%). Part of the problem was that researchers haven't flocked to field as much as we'd hoped they would. They weren't enthusiastic about working with something so controversial, that looked like it wasn't getting any backing or funding.

DBMine) Is there any particular researcher/ institution/ company that JDRF will be putting its money on first?

LS) We will not be pushing for any one particular institution or project to get funding, no. However, we're about to enter a period where stem cell research is really going to take off. Our roll is to make sure researchers spend time on diabetes, and to try to get the best scientists possible to work on diabetes -- to make that an attractive place to be.

DBMine) Will you be teaming up with the ADA on this?

LS) We have a very good relationship with ADA. We do lobby for legislation together where our priorities overlap. We try to recognize that they often have different priorities. Some things are higher on our list and vice-versa. It's a little easier for JDRF because we're a little more focused -- our constituency is more focused. They have a much broader constituency, so they have many more issues to deal with.

We don't actually need to be working in step on every single moment. We actually recognized that we can sometimes get more done by working on different things.

DBMine) So will other JDRF research projects, notably the Artificial Pancreas, still remain a high priority?

LS) Every year we review our priorities anew, but when it comes to the Artificial Pancreas project, that is a huge priority within the organization and that's not changing. We're very committed.

As you know, focusing on treatment is a new thing for us, but the response has been overwhelmingly positive. Like you, I have Type 1 diabetes and I wear a pump and a CGM system, with all the great benefits and frustrations. I think we're on the verge of revolutionizing the care of diabetes, and I'm thrilled that JDRF is at the forefront.

One great thing about JDRF: when this organization puts its mind to something, it gets it done, whether it's developing the artificial pancreas, supporting stem cell research, etc. Finding a cure has been our biggest challenge; it's a work in progress. But I am 100% confident we'll be successful in driving new technologies to revolutionize care. What we have now is good, but it's not good enough...

DBMine) All right, so I actually got some serious hate mail after my Sunday post on this topic. What do you say to those who stand against embryonic stem cell research on moral grounds?

LS) I face this a lot. I have done debates. I have worked with top Bush aides who were on the other side of the argument. I just try to de-personalize it as much as I can.

DBMine) Is that the JDRF's official position?

LS) This organization has had a clear position on stem cell research for 10 years. In 2001, JDRF led the efforts to stop Bush from banning stem cell research altogether. We understand people have legitimate different positions on this issue. And we respect that.

In my experience, the overwhelming number of people in the diabetes community are for it. But clearly some are against. And they have every right to have that opinion. If people are against it, we try to find ways to work with them on other efforts like the artificial pancreas. If they want to make a donation to JDRF and make sure it doesn't go to stem cell research, we can do that.

We have a very representative board of directors -- Democrats, Republicans, people of different religions, etc. And most charity groups that care about healthcare have a similar position to us.

In fact, JDRF's been a lead driver lobbying for stem cell research for the last 10 years.

I was able to talk to most members of Congress who were there at the White House today. They shared the impact that JDRF has had in their home states. And basically they all said, "You guys are driving this issue and you should be so proud of what you've done!"

Thank you Larry, and the JDRF Team -- for everything!

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JDRF is full of it and is wasting donations. I hope everyone thinks twice before donating to this fiasco. During the 2008 presidential campaign, then-Sen. Barack Obama said: "I believe that the restrictions that President Bush has placed on funding of human embryonic stem cell research have handcuffed our scientists and hindered our ability to compete with other nations."With all due respect, that is nonsense. With Obama lifting the restrictions on Monday, we will now be federally funding research that has yet to produce a single therapy or a single treatment of an actual human being, at least one that works. It has generated a lot of hope but very little change. It is he who is putting ideology over science.What has handcuffed our scientists is the difficulty of controlling embryonic stem cells and what they develop into. They're called pluripotent because they can develop into any type of human tissue, sometimes all at once.Embryonic stem cells have a tendency to develop into one of the most primitive and terrifying forms of cancer, a tumor called a teratoma. Adult stem cells don't have that problem.Recently the family of an Israeli boy suffering from a lethal genetic brain disease sought a solution in the form of injections of fetal stem cells. These injections apparently triggered tumors in the boy's brain and spinal cord.It's in the area of adult stem cell research that new discoveries are being made every day. Fact is, there are now hundreds of conditions and diseases actually being treated using adult stem cells drawn from umbilical cord blood and other nonembryonic sources.The typical reaction to Obama's move was represented in a Los Angeles Times sub-headline in its Saturday piece describing Obama's decision. It read, "Lifting Bush's limits on research will reopen a door for science." But no door had been closed.Bush's executive order banned federal funding only of new stem cell lines. Neither federal funding of existing lines nor private funding was banned. In fact, Bush was the first president to spend any money on ESCR at all. Clinton spent zero.The Times notes, as we have, that in 2006 researchers led by Dr. Shinya Yamanaka of Japan's Kyoto University were first able to "reprogram" human skin cells to behave like embryonic stem cells. But it claims the potential of these induced pluripotent stem cells (IPS) "is still unclear."No, it's not. They can do everything stem cells from destroyed embryos can do, except without the moral baggage or the destroyed embryos.This type of stem cell, according to the National Institutes of Health, offers the prospect of having a renewable source of replacement cells and tissues to treat diseases such as Parkinson's and Alzheimer's, spinal cord injury, stroke, burns, heart disease, diabetes, osteoarthritis and rheumatoid arthritis, to name a few.Last week, Canadian and Scottish researchers, led by Andras Nagy of the Samuel Lunenfeld Research Institute in Toronto, announced in the journal Nature a new and safer way to create IPS cells. The original method used genetically engineered viruses to coax the skin cells into a state biologically identical to embryonic stem cells.The new method uses strands of genetic material, or DNA, which can safely be removed once it does its job. The technique builds on Yamanaka's advance when he electrified scientists by reprogramming ordinary skin cells into stem cells capable of growing heart, brain and other tissues.Venture capitalists think IPS cells are promising and are willing to put their money where their mouth is. Last year, Kleiner Perkins, the veteran Silicon Valley venture capital firm that helped found the biotechnology industry, announced it was backing a new Bay Area company, iZumi Bio Inc., which will work on further developing the technology for creating and using IPS cells developed from adult stem cells.If embryonic stem cells are so promising, why aren't venture capitalists lining up and why does ESCR need federal funding? Indeed, let's stimulate science, not ideology.

LarryL|2009-03-09

Wow Nick. Thanks for enlightening us. If you listen to everything Amy posts here you'll drive yourself crazy. She doesn't mean to sound so wicked. She just answers to JDRF and that's that. She's a true believer in JDRF and they need people like her to survive.

Lauren|2009-03-09

Those of us who are actually scientists, thinkers, and believers in objective reality appreciate the work that these advocates have done on our behalf. I am glad this day is finally here. I am also glad that Obama has handed this over to the scientists, not the politicians. The research from here on out will be driven by evidence and results, not ideology.

AmyT|2009-03-09

Thanks, LarryL. It's more like I need people like them to survive. And Thanks, Lauren, for saying it so well.

Thomas|2009-03-10

Hi AmyI'm really sorry to hear that you've been on the receiving end of some abusive mail: some people really do need to reboot their moral compass!I strongly disagree with the embryonic research and will stick with the needles and risk of premature death myself rather than take a cure based on embryonic cells, but all sides in the debate should be allowed their voice without threats or harassment.All the bestThomas

NancyA|2009-03-10

It's truly unfortunate that Amy uses words such as "joyful" and "ecstatic" to describe the government funding of embryonic stem cell research. This shows her unwillingness to understand the great moral and ethical concerns many religious people have. The Catholic Church, one of the largest and oldest religions on earth, strongly and clearly has voiced its displeasure at the lack of respect for human life that this science represents. In fact, the Sanctity of Life is number 1 in the Hierarchy of Moral Truths of the Church. Now many of you atheists and Jews could care less about what the Catholic Church has to say, and that certainly is your choice. But why should they have to pay for this via taxes? No one is trying to take away your right to destroy human life, but why do we have to pay for it? Your dear leader Obama has also approved of government payment for all abortions. He has also fully supported the requirement that if an aborted baby is born alive, it is to be left to die and should not be given any form of life support. Finally, he is about to require that all hospitals must preform abortion on demand. This is his backdoor way to close down all Catholic operated hospitals so that the government can run them. I will never be able to understand Jews (Amy is a Jew) apparent love for abortion. I was once told the Jews are more liberal than they are Jewish. I hope others see that Amy's concern is more about abortion than it is about a cure for diabetes. Why else would she be so giddy over this? It's certainly not because there's any chance of a cure for diabetes from this technology.

Lauren|2009-03-10

Thank you Larry and Amy for helping us understand how wonderful and exciting the future is for all of us with diabetes. President Obama will make sure that there will be no stopping us to find cure for diabetes. We are so fortunate to be living in a time when a man such as Obama can lead us out of the terrible abyss that George Bush has taken the country. We all know he is the one that masterminded 9/11 and the 4000 additional soldiers deaths. He is also responsible for all the murders in our Cities and the incarceration of young black men who have done nothing wrong. Worst of all, he is a Christian and tries to force his beliefs on those of us who are actually scientists, thinkers, and believers in objective science and the importance of using embryos to save our lives.

GAMA|2009-03-10

Hope JDRF seizes this opportunity and makes a head way in the research understanding its responsibility to society.

Lauren|2009-03-10

I am wondering if there is a way I can direct all of my taxes to JDRF? I would rather have my taxes going to cure diabetes than for anything else, I don't care about the life or moral issues of stupid embryo's. I just want to be cured of my diabetes. The sooner the better. George Bush has prevented me from living the life I want to lead.

Denny|2009-03-10

Amy and Larry: Best wishes and good luck to you on your crusade. George Bush hated people with diabetes and would have rather seen us die. Thank God for Obama whom, with the help of Amy and Larry, will rid us of this horrible disease. Who cares what the Christian retards think anyways!

Junior Brooks|2009-03-10

Yesterday's executive order on fetal stem-cell research was all about politics and nothing about science. It had nothing at all to do with compassion or curing disease, it was just some cheap thrill in the undying abortion debate.Fetal stem cells are a surrogate for the abortion issue. There being precious little either side of the abortion debate can fight about right now, fetal stem cells have served as a substitute issue. George W. Bush signed the fetal stem-cell ban to appease folks in the anti-abortion crowd, and Barack H. Obama lifted the ban to appease folks in the pro-abortion crowd.And yesterday's cock-a-doodle-dooing about science winning out over politics and philosophy was pure bull crud. Liberal support for fetal stem-cell research is about sticking it to pro-life people. Period. It has nothing to do with science, it has nothing to do with new treatments, it has everything to do with politics.

Junior Brooks|2009-03-10

Diabetics truth seakers....check out this as an alternative to Amy's weird interview with Larry.http://online.wsj.com/article/SB123664280083277765.html

Nick|2009-03-10

Why is is that Larry refuses to acknowledge the cancer which is caused by use of biosynthetic insulin analogues (known by the FDA as insulin receptor ligands, BTW) like Lantus and Levemir?

Lauren|2009-03-10

Amy: Can't you do anything to block these stupid pro-lifers from having an opinion on this blog? I really despise these people. I'm going to report this to the Obama administration. These people and the pope must be stopped.

leanard|2009-03-10

Nick: The reason that the cancer link isn't acknowledged is because both Larry and Amy are in "bed" with the makers of Lantus and Levermir. Did you ever have any doubt?

libby|2009-03-10

How can I get on Larry's and Amy's tweets? They are so twitterific! God bless their little pancreases!!

smacbuck|2009-03-10

Nick, I respect your views and especially your efforts to be well-informed...so few do so. But your last line of supporting science instead of ideology struck me: I believe that is exactly what this EO is about. The strong opposition to early stem cell research is essentially faith-based...thus ideology. Again, I absolutely respect that belief and have many friends who believe as you. Friends who at the same time see the importance of supporting the wide-ranging research efforts of JDRF. But to say we don't need escr is the logic equivalent of saying we didn't need airplanes because we had trains. As to federal support, let's not forget that taxpayers already spend billions in support of faith-based initiatives and programs thru direct funding as well as tax relief. Finally, this science is barely 10 years old, and has operated under severe restrictions in this country for most of that time. That throttles private funding, as well as advances.And NancyA, all I can say is...wow. You must read a lot of pass-along emails. I have one word of advice for you: Snopes.com.

Erik|2009-03-10

There are certainly a lot of divergent opinions being posted here. What I wish both sides would do is keep irrelevant politics and morality out of their comments. The relevance (and I use that word lightly) of some sort of apparent Jewish abortion "love" or Bush being behind 9/11 really have nothing to do with stem cell research and are red herrings at best.

Lane|2009-03-10

I must say that those on both sides of the issue have spewed some pretty foul stuff here. Do you think anyone is going to take you seriously if all you can do is put others down? If you feel so strongly about what you believe then state that and move on. Putting others down for what they do or do not believe is childish and does not serve to either support or damage the decision made by President Obama. I am the mother of a child with Type 1 diabetes. I want my son cured more than anything in the world. I do not, however, support embryonic stem cell research. I have several reasons why I feel this way. I won't go into all of them here. I just wanted to show that not all out those affected by D believe this is the right way to go. My support will always go to Dr. Faustman (http://www.faustmanlab.org)

Sara|2009-03-10

I just finished reading all the comments on this post after reading Amy's comment on Allison's blog Lemonade Life. All I can say is, Wow! I was just about to give up on the comments entirely, until I read Lane's comment and now I can say - ditto!